Finally got registered!

[Savemeimdtba]

Phew, I had quite an ordeal trying to get my account activated here!  I'd try every few weeks and it wouldn't work.. never got the approval (something must have been wonky with my email address) - I tried a different one and finally got it to work today!

Anyways, my names Kristi - I've been reading here for a few months.  I've had kidney problems all my life but my creatnine had always been around a stable "2" then all of a sudden in November 2008 I ended up in the ER and it had leapt to 11... I had been feeling sick all month off and on but it came and went (the nausea, tiredness, gaining weight) and I thought it was just the bug that was going around my school.  I told my nephrologist but she didn't think much of it - after all, I had just had labs done on Nov. 4th and everything was fine.  They thought they'd be able to reverse it since they figured it was dehydration... after three days, they decided they couldn't and I had to have a hemo-catheter placed. 

My hemo-catheter never worked well.. never got over 150 blood flow and the machine constantly beeped.  Had it replaced and the next one did the exact same thing... I had decided I wanted PD and was working towards that but it just wasn't happening fast enough.  On the first attempt to get the PD catheter I had some sort of infection in my belly button so they didn't do it (and in that time, I had to get another hemo-catheter). If you want to read how badly the first surgery went - check out my blog entry - http://yournextdisaster.sweet-catastrophe.com/?p=1219

After two weeks, the surgeon decided that the infection was nothing major and scheduled the PD cath surgery again.  This time it went successfully, I got trained all last week and I am now doing PD!  It's a lot of work.. but much better than hemo where my blood pressure was constantly dropping and i felt like crap ALL THE TIME.  I can't wait til I can get the cycler!  The good thing is I can now take a shower and that awful hemo-catheter is out and no longer causing me pain when I sleep.  Every step of the way I've been checking here to see how someone else might have dealt with similar situations and it has really helped me in knowing what to expect. 

I am not yet on the transplant list... they say I have to lose 30lb's before I can even be evaluated and my family can be tested.  Which I think is kind of crazy and unethical, but what can I do?  Has anyone else had this situation?  I had lost about 12lb's and then started PD and it's mostly come back which is quite discouraging.. since my Dr. said PD would help.  So, I'm just trying to keep hope alive and at least now I'm doing PD and feeling good. 

[G-Ma]

 

[paris]

   Glad you got the account activated and are here with us.  Re: the tranplant list; one requirement has to do with body mass index, so it seems like many have to lose some weight to get in the right range. You do have to jump through a lot of hoops to get listed, but it will be worth it in the long run ( I say with great hope!)   I am glad you have been able to read the threads here and already know how supportive this group can be and informative.  Good news that PD is going well.     Keep us updated!  And again, welcome to this great site. You are amoung friends 

[RichardMEL]

Hi Kristi and welcome - glad you finally got on board!!

I can't speak about your PD stuff but just on the transplant evaluation and needing to lose weight - they do that because it's in your best interests - at a seminar I attended about transplantation last year they went through it that the outcomes for those with a too high (or low actually) BMI was a lot worse so, down here at least, they will only evaluate if your BMI is less than, I think, 30 and they prefer less than 28 or so. It probably has something to do with the extra stress on the cardio system in handling the extra weight - I am not sure. So they want the best outcome for you by asking to get your weight down. I know it is difficult but if you can get that weight down it will really be generally better for you.

Re your weight went on when you've started PD... are you including the fluid in your abdomen as part of the PD in that? I mean that would add weight obviously....

Good luck with it all. I know it is stressful, specially with wanting to get listed and all. I hope you can get that happening really soon!

Welcome!

[Romona]

 

[willieandwinnie]

  Kristi. So glad you joined us and that we have already been a help to you. That's what we are here for, help and support. Please post often and I look forward to hearing more about you. 

[kellyt]

    Welcome aboard!  So glad you finally were able to register.  I love that word "wonky".  hee hee

[Joe Paul]

Welcome Kristi, good to have you aboard.

[MIbarra]

 

I had a problem with the weight thing too. First, they told me lose 20 pounds.. Then it was more and more - everytime I turned around, they changed the amount - and I was waitlisted on the transplant list. My doctor had to argue with the transplant committee that I had lost what they orginally asked me to, until they finally relented. I got a transplant very quickly after that!

Have you asked if they will list and put you as "waiting"? I continued to work my way up the list, just wasn't eligible for a trasnplant if one would have come around until they lifted my waiting status.

Good luck with your weight loss!

[monrein]

 

[paul.karen]

 
Glad you finaly made it onboard.
Hope you road on PD continues to go smoothly for you.
P&K

[David13]

Sorry your journey to PD was so long and difficult.  Welcome to the site.   

You will find a great deal of helpful information here as well as supportive people who will be glad to share their experiences with you. 

I hope to see you posting often.

[Bajanne]

Welcome to our community!  So glad that you did not give up, but persevered.  We have been going through a system update recently, so that could have caused the problem.  But you are here now! And you are with family! Continue to read as much as you can, and post as much as you can.
Looking forward to hearing from you.



Bajanne, Moderator